Blood, Sweat, and Tears

Jenny here.  If you have been following FB daily updates some of this first part will be familiar but, for those only keeping up with us via blog, I will summarize some to catch you up.

The pharmacist met with us today to go over medications and precautions for post discharge.  During that hour meeting he said to think of Wil as a 14 day infant, because that is how old his immune system is today!  And I thought it was really smart.  Small simple feedings, avoid unnecessary exposure, keep on a schedule with naps, exercise, and medical care  (ugh, the meds list...and some are uber important, lots of directions and instructions.  And a lot of symptom education about GvHD).  He said he'd never choose to take a newborn to Walmart or out in the hot sun on a Saturday so neither should Wil!  But we are not out of the hospital just yet...more on that in a bit.

Within an hour of posting last week's blog, Wil started to have shakes, chills, and greater fatigue.  They had told us spiking a fever is often part of this process and a sign that new cells are trying to unlock their new homes and settle in (engraft).  The high fever didn't come that night though.  I can best describe this week as Wil feeling like he has the flu, still nauseated/vomiting, body aches, extreme fatigue, lack of appetite, etc.  Crummy feeliing.  All the time.  He says "this is just hard."  No complaints, but he's right.  It's hard to watch as well.  Every little calorie he does keep down goes to the transplant process, which leaves him no energy for daily living.  Yet he has only missed one day of walking and gym.  Even if he has to push his pole down the hall slowly and take a break, he gets up several times a day and gets it done.  I am so proud of him!  He is now down about 15lbs since he admitted, just not the way you want to lose it.

The next few days included thrush, a positive test for CMV (not active,so just being watched), had chest pain (ruled esophogitis after a clear EKG), and lots and lots of blood.  His numbers were pretty consistent most of the week and not really rising as fast as we, of course, had hoped...but all within "expected" per his team.  Not having enough (or any sometimes) of a type of blood cell really affects a person.  When you have almost no platelets, stubbing your toe is an emergency, you aren't allowed to shave your head or cut your nails, etc because any wounds or cuts won't scab and could bleed out.  When you are low on hemoglobin (a molecule in red blood cells) that carry oxygen in your body, you are short of breath constantly, even just getting up and taking a shower or brushing your teeth.  And when you have 0 neutrophils (which make up the majority of white cells, you have no fighters in your body to ward off infections of any kind and are constantly at risk).

Sidenote:  I would love to take some of this in stride and to "not stress."  I am proud of how I am doing quite honestly.  I know my anxiety does not help the situation, but minimizing as many risks as possible is just part of this journey.  It's so scary coming up on flu season.  I have, what I assme to be, a healthy and normal immune system.  Which means I can be exposed to things and not get sick, yet take home the flu, a cold, or anything else and not even know it...and infect my hubby who has no immune system AND no longer any immunities (after this is all said and done he will need all new vaccines, the old ones were wiped out before transplant).  I pray everytime I leave the house.  Everytime I go to the store.  I see germs now where I never took a second look, and try to minimize contact.  Anyone else that may come into contact with Wil (first person or through me) please take precautions too.  To those we love, wash your hands (and learn the proper way!)  Take your vitmamins, eat well, exercise, sleep, and get your flu vaccine (I know this one causes controversy, but Wil can't have a vaccine to protect him, so it may be a year to consider one yourself...I often don't either, but this year I will be!).

Over the weekend is when Wil finially caught the fever...and we are not talking disco!  He slept with icepacks, had the normal x-rays and cultures done to rule out infection, and felt his lowest.  His blood pressure was on the low side of normal, yet his pulse was 125-135 while resting.  This too they say is "normal."  He flirted with fever for a few days off and on.  His heart rate is now about 117 resting and temp is normal.

Monday we had the news we had been waiting for...his counts were rising and they had contiuned to rise until today.  Today they were all lower.  All he can think about is coming home right now.  We were set for tomorrow (Thursday), but it all hangs in the balance right now.  As a write this, he is getting his first bag of blood since the weekend.  While the team says this happens sometimes, for Wil it was hard to hear his discharge date may be delayed.  He can barely keep his eyes open, but when he does, he just looks sad.  He wants his own bed and uninterrupted sleep.  But all is not lost, if his numbers look better tomorrow he may still get clearance to come home.  Prayers and well wishes please!

For me, last week I was not yet ready for him to be home.  Hospitals are anything but germ free, but there is still so much support here for both of us that will be different once we are home.  I am happy to say I took care of myself this week and had a maid come in yesterday and a lawn service come today.  While an old house will never be perfect, she dusted and santized all flooring, bathrooms and kitchen, and wiped down doors, switches, and cupboards with natural non-toxic cleaners.  Feeling ever so weird about my first hired help, I worked on some other areas for a few hours too so we could get more done.  5 hours later the maid left, both of us having worked up a sweat.  I still have a few items on my list to do (fridge, replace A/C filter, buy a few new pillows, make a sanitizing spray, and baking soda/essential oil cleaning of the furniture).  I was tired, but had a hopeful sense of the transition home.  Even more happy with the grass getting cut early this morning!  We are in much better shape for his arrival.  

I wish I would have broke down and got the help sooner and just spent the money.  I carried with me so much guilt in reaching out.  How do you ratonalize spending money that could be spent another way?  Shouldn't I be able to do it myself? Having taken the plunge, should we get the chance to be on the other side of this cancer thing, the first thing I will offer a caregiver is this advice:  Get some hired help.  Loved ones will want to help, but scheduling will be a nightmare and everyone has lives they are maintaining.  And then I'll find and pay for some sort of service for them or take up a fund.  Over and over we have been blessed by charity and each has helped us in some important ways.  Often I have wanted to hire someone, then never been able to bring myself to use that money for anything other than a medical expense.  The past two days have changed my life and my heart on that matter.  When you are in the fight of your life, having help like an occasional maid or monthly lawn service, is not a luxury item like I once thought it to be.  I am providing, on a daily basis, a service no one else can--a wife caring for her husband while his body breaks down, is built up, put through the wringer, battles with the emotional cost to it all, and yet only requests one thing--ME.  I can hire a once a month maid and figure out bills later.  I can't get back this time with him, I can't know how long that time is, and I can't replicate myself.  

We have this one chance, every moment, every day, to make our time count.  I will be busy and I know I won't become a princess because I enjoy taking care of him and our home.  But having a few extra hours, even if just monthly, to reduce my stress load and be able to be more present with him because of it?  It brings me to my knees in tears.  The grateful, soulful kind.

And so my sanity has been restored a wee bit.  

And I slept without taking a Benadryl for the first time in a week.  And cooked an actual meal for myself.  And cuddled with the dogs.  And I had Thai food with a friend. And soaked in the clean tub and cried happy relief tears.  And it came, thanks to a couple of people who threw some cash in to get it done (whether you knew it or not!).  Our credit will not be the same for years.  That ship has sailed already (its a lie that medical bills won't go to collection if you just pay a little each month...they still can).  I just can't care more than the care load I am hauling around already.  I'm doing a damn good job.  If Wil survives, we have years to make amends with creditors.  Just one more thing we can look forward to facing together.  And if he doesn't, well, then I spent my days with him in meaningful ways and worried about the stupid grass.  Either way, I've not wasted the moments I've been granted with this man.  No regrets.